Health Council of the Netherlands report on CFS (2005)

[Tom Kindlon]

I posted this to Co-Cure back in 2008. I thought I'd post it here as many people won't have seen it there:

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FWIW

Generally a lot of people in the English-speaking ME/CFS world would be more familiar with the writings and talk on CBT by English professionals.

However, Dutch researchers have also written a lot on the subject and for general readers of the literature (e.g. people looking through PubMed), without scepticism, their claims that CBT is leading to "recovery" and "full recovery" in a reasonable percentage of patients can look impressive. [Aside: personally, I think they've haven't proved the patients have recovered at all, they've just set very low thresholds using a few questionnaires i.e. not objective measures].

Anyway, for my sins, I have recently read: Health Council of the Netherlands report on CFS (2005):

Dutch language version: http://www.gr.nl/pdf.php?ID=1167&p=1
English language version: http://www.gr.nl/pdf.php?ID=1169&p=1
(ETA: now at: http://www.gezondheidsraad.nl/en/publications/healthcare/chronic-fatigue-syndrome)

I'm thought some people might be interested in the p.68 extracts from:

~~~~~~~~~~ 6.5.3 Dutch experiences with CBT ~~~~~~~~~~~~~~~~~~~~

P.67

"The Nijmegen Expertise Centre for Chronic Fatigue (NKCV) has developed a treatment protocol that is based on the perpetuating cognitive and behavioural factors from the aetiological model that was discussed in section 5.433,34,134,323,337. The main points are the 'restructuring' of dysfunctional ideas and behaviour, and controlled exercise. The protocol has been tested in a multicentre randomised study21"

P.68

".. it has been suggested that CBT is no more than a means of coping better with the symptoms. The treatment goal in Nijmegen, however, is recovery and a return to work: the therapy is considered to have been successful when the patient no longer regards himself as a patient33."

"Self-sufficiency is an important aspect. The patient must not undergo any other medical examinations or treatments for CFS during CBT because he needs to be able to attribute improvements to his own behaviour.* Furthermore, he cannot, for the time being, expect to receive assistance with such things as taxi fares and applications for services and facilities (e.g. a stairlift or electric mobility scooter), since these are incompatible with the objectives of CBT. It is extremely important to motivate patients to undergo therapy."

*Tom: so Dutch-style CBT couldn't be combined with medical treatments as some professionals in other countries might recommend.

One of the co-authors has been at various meetings small meetings organised by the CDC's CFS team:

. Prof. G Bleijenberg Professor of Medical Psychology, St Radboud University Medical Centre, Nijmegen

Two of the co-authors have also produced a lot of writings over the years (perhaps some others on the committee have published also):

. Prof. B Van Houdenhove Professor of Psychiatry, University Hospitals, Leuven

. Prof. JWM van der Meer Professor of Internal Medicine, St Radboud University Medical Centre, Nijmegen

It seems to me that no dissenting voices were let on to the panel.

Some other things in the report I particular disliked:

- bashing patient organisations [done not once but numerous times (if there had been patient representatives on the panel this would not probably have happened]

- the section on children (too many problems to mention!)

- Comments on "fitness to work". I'm appending a sample section below. The claims are repeated elsewhere.

Tom Kindlon

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Comments on "fitness to work" (Not a recommendation) (Make sure to read the first two bullet-points!!)

P.17

Openness is essential when assessing fitness for work. This is important in order to avoid (where possible) the many misconceptions and differences of opinion that surround CFS patients' fitness for work. One such misconception is the belief that the diagnosis and the cause of a disorder are what determine a person's entitlement to absence from work or to receive social security benefit. It is the responsibility of occupational physicians and insurance physicians to explain that manifestations and consequences of illness are what matters, and that the assessment of fitness for work hinges on three issues:

. General functioning: Someone who, as a result of disease or infirmity, generally speaking cannot function is also unable to work. If he is, in fact, able to function to some extent, then certain forms of work will also soon be possible.

. Consistency: of reduced fitness for work can only be said to apply where there is a logical and consistent relationship between illness, limitations and a decline in work participation. If that is not the case, then there is no incapacity due to illness.

. Problem analysis: People's stress load is only partly determined by working conditions. In addition to the medical aspects, an insight into the psychosocial context plays an essential role when forming an opinion on an individual's fitness for work.

 

[Valentijn]

The bullshit listed above is definitely making its way to practitioners. My psychologist gave me the "you are not a patient!" line when she heard I was getting my orthostatic intolerance investigated. She also informed me that doctors could never help me and that I would remain severely disabled unless I cured myself. It briefly made me intensely suicidal.

And pretty much the entire clinic was opposed to me getting a mobility scooter. The one exception was the physical therapist, so they brought in someone else to lecture me about "only using the scooter on bad days" during an appointment with the physical therapist. They could not comprehend that the scooter was for my good days, since I was incoherent and unable to sit up on the bad days.

Those guidelines are directly responsible for aggravating the effects of disability, psychologically harming patients, and limiting mobility.

 

[A.B.]

Valentijn, why did you go to a nutter in the first place? Did you not know any better at the time?

 

[Ren]

Evil.

 

[Valentijn]

Valentijn, why did you go to a nutter in the first place? Did you not know any better at the time?

It was a clinic that started off as a real ME clinic a couple years earlier, but transitioned to Psychobabble Central at about the same time I started going there (I saw the real ME doc for my first visit, then the clueless tool for the 2nd visit). The nasty psychologist also started off with the sympathetic approach to gain trust before transitioning to the blame-game. And pacing and relaxation techniques were also used as a lead-in to GET.

So the first few months weren't bad (if you don't mind being lied to while real treatment is withheld) and even a bit useful in managing things. Then came the full-on CBT/GET psychosomatic crap.

 

[Esther12]

The report didn't seem to be available at the above links, but is here:

http://www.gezondheidsraad.nl/en/publications/healthcare/chronic-fatigue-syndrome

Just read the summary, and it was nice to actually see them acknowledge (on p 6) that CBT expects a lot of patients. They rather exaggerate the benefits though!

Cognitive behavioural therapy (CBT) is an effective treatment. There is no shortage of treatments for CFS – especially on the internet – but few have been tested for efficacy. The systematic reviews that have been conducted of interven
tions for CFS reveal CBT to be an effective treatment. CBT has been successfully applied in several places to patients with CFS. The therapeutic effect has proved to be long-lasting and no deterioration has been shown to occur as a result of this therapy. However, CBT is not a panacea. The therapy is intensive, makes great demands on the patient and has a success rate of around 70%. Success means that the patient is restored to a more or less normal level of functioning. However, many successfully treated patients will no longer return to their former level of functioning, but have learned to adapt to the constraints imposed by their illness. Some people experience this as a loss that they must accept.

Self-efficacy is an essential element in CBT. It is extremely important to motivate patients to undergo the therapy. CBT is inextricably bound up with a gradual stepping-up of physical activity (‘graded exercise training’, GET). Whether GET is effective without any form of CBT is being investigated at this moment in the UK. The patient population is diverse and not everyone benefits from CBT according to the current protocol. The development of additional, less intensive variants of CBT will make it possible to bring supply more into line with demand.

 

[Valentijn]

However, many successfully treated patients will no longer return to their former level of functioning, but have learned to adapt to the constraints imposed by their illness. Some people experience this as a loss that they must accept.

If the therapy is successful in treating a disease which they approach as purely psychosomatic, how on earth do they explain a failure to return to normal functioning?

 

[biophile]

Cognitive behavioural therapy (CBT) is an effective treatment. There is no shortage of treatments for CFS – especially on the internet – but few have been tested for efficacy. The systematic reviews that have been conducted of interventions for CFS reveal CBT to be an effective treatment. CBT has been successfully applied in several places to patients with CFS. The therapeutic effect has proved to be long-lasting and no deterioration has been shown to occur as a result of this therapy. However, CBT is not a panacea. The therapy is intensive, makes great demands on the patient and has a success rate of around 70%. Success means that the patient is restored to a more or less normal level of functioning. However, many successfully treated patients will no longer return to their former level of functioning, but have learned to adapt to the constraints imposed by their illness. Some people experience this as a loss that they must accept.

Self-efficacy is an essential element in CBT. It is extremely important to motivate patients to undergo the therapy. CBT is inextricably bound up with a gradual stepping-up of physical activity (‘graded exercise training’, GET). Whether GET is effective without any form of CBT is being investigated at this moment in the UK. The patient population is diverse and not everyone benefits from CBT according to the current protocol. The development of additional, less intensive variants of CBT will make it possible to bring supply more into line with demand.

The claimed 70% success rate is hogwash, particularly if they define success as "more or less normal level of functioning", and fails to account for natural course and other factors.

CBT is inextricably bound up with a gradual stepping-up of physical activity (‘graded exercise training’, GET).

Just as the fall of CBT/GET for CFS is inextricably bound up with the failure to demonstrate stepping-up of physical activity.

Whether GET is effective without any form of CBT is being investigated at this moment in the UK.

I guess that is a reference to the PACE Trial?

 

[Sean]

The therapy is intensive, makes great demands on the patient and has a success rate of around 70%. Success means that the patient is restored to a more or less normal level of functioning.

Straight fraud.

 

[Esther12]

The therapy is intensive, makes great demands on the patient and has a success rate of around 70%. Success means that the patient is restored to a more or less normal level of functioning.

I was just looking for the source of this claim, and it seems that the report is no longer at the above address. Not that important, but I thought I'd mention it in case anyone had a copy they could attach here okay. I should really do that as standard when posting things.

Also, maybe showing problems with bias/spin/misrepresentation in this report could be useful for those campaigning about the current CFS panel/thing(?) in the Netherlands.

 

[Tom Kindlon]

I was just looking for the source of this claim, and it seems that the report is no longer at the above address. Not that important, but I thought I'd mention it in case anyone had a copy they could attach here okay. I should really do that as standard when posting things.

Also, maybe showing problems with bias/spin/misrepresentation in this report could be useful for those campaigning about the current CFS panel/thing(?) in the Netherlands.

https://www.gezondheidsraad.nl/en/t...y/optimum-healthcare/chronic-fatigue-syndrome

 

[Esther12]

https://www.gezondheidsraad.nl/en/t...y/optimum-healthcare/chronic-fatigue-syndrome

Okay... I have to admit I may have not done the best search. Ta Tom.

Copies attached.

Text from the webpage:

Virtually everyone feels tired, or even exhausted, every now and again. We usually know why this has come about and the feeling wears off, either spontaneously or after a little extra rest. This is not the case with chronic fatigue syndrome (CFS). CFS patients feel perpetually tired and exhausted and also have a host of other physical complaints. CFS is also known as ‘ME’ (myalgic encephalomyelitis), a term that the Committee does not use since it erroneously implies the presence of an inflammation of the brain and spinal cord. CFS is a controversial disorder. There are people both within and outside the world of medicine who believe that it does exist, and others who believe that it does not. This situation has given rise to major differences of opinion concerning the ability of CFS patients to work, and thus to their entitlement to social security benefit.

Committee

• Dr E Borst-Eilers, former Minister of Health, Welfare and Sport, Bilthoven, Chair
• Prof. JM Bensing, Professor of Health Psychology, University of Utrecht
  Director of the Netherlands Institute for Research into Health Care (NIVEL), Utrecht
• Prof. G Bleijenberg, Professor of Medical Psychology, St Radboud University Medical Centre, Nijmegen
• Dr CF Dagnelie, general practitioner, Rotterdam, lecturer in family medicine, University Medical Centre, Utrecht
• Prof. MHW Frings-Dresen, Professor of Occupational Health, Academic Medical Centre, Coronel Institute for Occupational and Environmental Health, Amsterdam
• Prof. JJ Heijnen, Professor of Psychoneuroimmunology, Wilhelmina Children’s Hospital, University Medical Centre, Utrecht
• Dr AM van Hemert, psychiatrist and epidemiologist, Parnassia Addiction Research Centre (PARC), The Hague
• Prof. B Van Houdenhove, Professor of Psychiatry, University Hospitals, Leuven
• Dr H Kroneman, medical consultant UWV, Amsterdam
• Prof. SJW Lamberts, Professor of Internal Medicine, Erasmus Medical Centre, Rotterdam
• Prof. JWM van der Meer, Professor of Internal Medicine, St Radboud University Medical Centre, Nijmegen
• Dr B Terluin, general practitioner, Almere, academic staff member, family medicine, Free University Medical Centre (VUMC), Amsterdam
• PC Groeneveld, Ministry of Health, Welfare and Sport, The Hague, advisor
• IMJ Pieters, Ministry of Social Affairs and Employment, The Hague, advisor
• Dr YA van Duivenboden, Health Council, The Hague, secretary
• Ş Levent, Health Council, The Hague, project assistant

This publication may be cited as follows
Health Council of the Netherlands. Chronic fatigue syndrome. The Hague: Health Council of the Netherlands, 2005; publication no. 2005/02E. ISBN 90-5549-554-9